We have had so many good days in a row. I have been holding my breathe waiting for the other shoe to drop. And if this is all we are going to get, then yeah! They are trying to wean her from her narcotics. Truthfully, she has been on something, versed and fentanyl or methadone and atavan since her heart surgery March 3rd. She isn’t too keen on the withdrawn process, so we’ll go more slowly on that. We are down to 3 on Nitric! So far so good on that wean!
In OT today she was re-introduced to the binkie. She will allow her mouth to be touched now. She will taste the lollipop, but the binkie went into her mouth – as in on the inside! That was not so wonderful. And she couldn’t remember what to do with it inside her mouth. We’ll give her more time and opportunities. I took this picture right before she placed her hands over her mouth to block the binkie. Smart girl!
Yesterday: Bella got to sit up in the Tumble Form chair. She was doing so well. She really enjoyed sitting up.
Jason and I had Trach CPR class at 5PM. Jason got here in time to see Bella sitting up! About our class – I hope I can remember all of that in an emergency. Was that 30 compressions or 20 breathes? They gave us a handout that we are going to tape to the inside door of the storage cabinet in her room. It’ll be right there in case I need it. Not that I ever panic!
Love the hands over the mouth! Your right ,smart girl! She knows what she wants and what she doesn't.Gotta love it!
My oh,oh my Bella ,aren't you showing us all!Sitting up like such a very big girl!As for the oral stuff,let me tell you a story:Zoey's heart could not handle anything oral,bottle,breast or binkie for 5 1/2 months.I pumped milk that ENTIRE 5 1/2 months.G-tube fed her and allowed her to grow healthy to heart surgery.After surgery I reintroduced breastfeeding and binkie and what do you know,took them both!!Never underestimate the determination of these children.But then again,I am not telling you anything new!Enjoy another boring day my friend and I am sorry for the loss of Bella's little friend.I understand your feeling completely.
Oh my gosh, her hair is getting so long!! And her eyes are huge, its so nice to see her up. Looks like she's ready to go home.
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Oh and I was going to tell you. Jax came home on an ativan, methadone wean because he spent 4 months being drugged. It was hard because you had to give one every two hours and figure out how much you go down each time. It was quite a job.
It makes me so so happy to hear about all these good days.I am sure it gives you peace, even though the 'cautious optimizim' can be daunting too! Hang in there and breathe, smile and keep taking pictures. Is sooo good to see her sitting up! She is an angel!
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